Tag Archives: chemotherapy

Benefits – Government climbs down a step

Money woes hit cancer patients


but bullies made to climb down

 

If having chemotherapy wasn’t bad enough, under new Government regulations patients faced losing a large part of their entitlement to benefit if they weren’t able to work.

Now, after a barrage of criticism from Age Concern, Macmillan and many, many others, the government has rewritten plans to change benefits for cancer patients.

Getting real, it has said “it was clear some patients were unfairly missing out on support.

So having spent millions on changing the rules (without listening to those who understand these things), La La’s bully boys have had to climb down – a bit.

Employment and Support Allowance (ESA)

The dispute centres on the Employment and Support Allowance (ESA) system, which divides claimants into two categories.

Previously, only those receiving non-oral chemotherapy were eligible for unconditional assistance, but now a wider range of drug and radiation treatment will be included.

But Macmillan said some patients could still be made to undergo medical assessments before receiving benefits.

These assessments can be undertaken by civil servants with no medical training, and as polio patients have found, no understanding of medical problems of those faced with diseases.  e.g. some polio patients are able to shuffle a few steps – then that’s it.  Assessors were saying “let’s see you walk”, then after three or four steps, ticked the box that said they were able to walk – and didn’t wait to see if patient was even able to return to where they started.

The government was hoping to introduce the amended plans from April, but having failed to secure Macmillan’s support, was launching a consultation to obtain a wider range of views.  One questions why La La didn’t consult with charities before starting this?  Why waste yet more money on expensive ‘consultations’?

Those deemed to have limited capacity for work are placed in the Support Group and are not required to undertake any work-related activity.

Those who are deemed able to perform “work-related activities” which might help them eventually return to work face means-testing after 12 months.

‘Debilitating’

Under the government’s original proposals, only those patients whose chemotherapy drugs were injected into a vein, the abdomen or the spinal canal would automatically be placed in the Support Group.  This took no account of radiotherapy or hormone therapy treatment, which can be equally devastating.

 

[We] remain of the view that automatic entitlement is vitally important for cancer patients receiving treatment”

Macmillan Cancer

Those receiving chemotherapy drugs orally – perhaps taking tablets at home rather than visiting a hospital – or receiving radiation only would go into the work-related activity category.

The consultation document states: “This was based on a view that invasive chemotherapy is more debilitating in most circumstances than oral chemotherapy. However, this view is no longer supported by the evidence.”

It goes on to say that evidence provided by Macmillan “supports the view that all forms of chemotherapy may cause substantial debilitation” and severe side-effects.

The rewritten plans presume that any individual undergoing any form of chemotherapy or site-specific radiotherapy should be in the Support Group, without them having to undergo a medical assessment.

It says that in “a small number of cases, where the evidence indicated that the debilitating effects might be limited” individuals may be invited for a medical assessment to judge their fitness to work.

But Macmillan said it was still not happy with the proposals.

As well as widening the eligibility, guaranteed entitlement to entry into the Support Group has been amended to a “presumption” based on “a paper assessment”.

But Macmillan are standing firm, saying the original idea “was an erosion of the legal protection given to patients and it was unclear what the paper assessment would involve”.

“We don’t agree with this proposal and remain of the view that automatic entitlement is vitally important for cancer patients receiving treatment,” the charity added.

What you can do

If this affects you

  1. Keep an eye out on Macmillan’s website for updates   www.macmillan.org.uk   0808 808 00 00
  2. Or contact Age UK  www.ageuk.co.uk       0800 `69 6565
  3. Keep an eye out for petitions – from Macmillan, 38 Degrees, etc.  The cowardly Government are learning to hate these!
  4. Let your MP know you are worried.

 

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Pain as side effect of drugs is badly handled

Why are medics

so bad at treating Pain?

LONDON, ENGLAND - JUNE 13:  Andy Roddick of US...

Roddick stumbles with pain daylife

 

It happens to Tennis Players such as Andy Roddick, footballers – and other sportsmen.  But they have highly-paid doctors in their team, ready to help at the first twinge.

In Britain, we find it difficult to get effective help;  at a recent Parliamentary meeting, Ash Soni, member of the Government’s prestigious Future Forum,  condemned the way cancer patients suffered from side effects from drugs.  Instead, doctors dish out painkillers as an easy way to handle pain.

Unless you are treated privately.  Or happen to live in an area where the post-code lottery is banned.

When my invaluable private neurology specialist sent me off to see his tame Physio, she gave me very specific targeted exercises to help relieve cancer-drug related pain.  Provided I keep up with a half-hour session each week doing these exercise, this pain has disappeared.

Contrast that with Cindy’s treatment.  We were chatting in the waiting room – as you do – when she said through gritted teeth, “the next nurse who approaches me with a clipboard and a perky smile, to ask “on a scale of 1 to 10, how bad is the pain?” is going to get bopped on the head with that clipboard”.

And as evilly-grinning perky nurse approached, Cindy warned her :  “I DON’T know how had MY pain is.  I only know it is BAD ENOUGH that it is making me miserable.  Do you want ME to start screaming?  Or what will get into your thick head that I need help?   Give me that clipboard – I will ram it over your head and you can tell me how the pain scale registers for you.

The startled nurse shot back into her cubby hole;  when Cindy was called through by another nurse, the door shut firmly, and we never heard the end.

ONCOLOGY NURSE ADVISOR

This is magazine for professional nurses;  recently they printed an excellent article on Pain, saying “It is one of the most challenging aspects of achieving quality palliative care for the patient coping with cancer.

  • “A patient may experience psychic pain caused by having cancer and physical pain caused by the disease process.
  • A patient may have residual pain from a preexisting condition, or the ongoing pain of a concomitant disease or infection.
  • Or, the patient’s pain can be caused by cancer treatments.

Neuropathic pain is one of the worst types of pain for the patient to experience and the oncology clinician to treat. Radiation therapy, infections such as herpes zoster in immunocompromised patients, or nerve impingement from a tumor can all cause neuropathic pain, as can chemotherapy.

The latter affects sensory, motor, and autonomic pathways and is usually referred to as chemotherapy-induced peripheral neuropathy (CIPN). CIPN is a debilitating condition affecting patients with cancer or who are recovering from cancer. No medication specifically targets this type of unremitting pain.

CAUSATIVE CHEMOTHERAPY AGENTS

A number of chemotherapy agents are culprits of peripheral neuropathy in patients with cancer.

Neuropathic pain often worsens over time; the longer the patient is exposed to chemotherapeutic treatments the worse the pain gets—even as the medications effectively treat the cancer. Amy P. Abernethy, MD, director of the Duke Cancer Care Research Program at the Duke University Medical Center in Durham, North Carolina, explained it this way :

“Several things happen in the treatment of cancer related neuropathic pain. The medicines we have don’t work well, so we end up using accumulating medications with accumulating side effects.

“It takes a long time to get there. So for people who have a limited life expectancy, we don’t have medicines that work overnight. We’re sequentially adding things, different medications. Figuring out what’s going to work on someone’s pain takes a while.

Also, with lack of NHS resources, the PBP (poor bxxxxy patient) finds doctors don’t have time to help, so yet again they are prescribed the next pain-killer drug on the list, and left to ‘see if this works’.

Furthermore, the neuropathy of cancer is a persistent problem. One study found that cancer survivors can experience pain for more than a decade after completing treatment.

MiEDITATION, MEDICATION, AND EXERCISE

Some patients find relief with meditation.

Some improve with applications of moist heat, such as Deep Heat

Others prefer ice treatment such as Deep Freeze

(depending on which drug contributed to the pain).

These two products have helped me with different types of pain, and can be obtained in all good chemists – so worth a try (and you see these in most doctor’s bags treating top sportsmen).

 

Physical therapy, massage, and acupuncture may also be effective for certain patients.

  I also get relief by using Regenovex patches if I get a particularly bad   ‘attack’ and can’t work out what causes the pain.

These are made by Mentholatum, whose products you often see carried by sports coaches to relieve pain in highly-paid footballers and athletes bodies.

 

 

HOW TO TREAT?

In the States most palliative care specialists conclude that symptomatic treatment is the best approach for CIPN at this time.

They suggest starting with a broad-spectrum analgesic, such as

  • an NSAID.
  • Tricyclic antidepressants such as amitriptyline (Elavil, Endep, Vanatrip)
  • and nortriptyline (Aventyl, Pamelor, generics), selective serotonin reuptake inhibitors (SSRIs) such as duloxetine (Cymbalta) and venlafaxine (Effexor, generics)
  • Gaba-pentin (Gabarone, Neurontin, generics) or pregabalin (Lyrica) are often ineffective for patients with CIPN.
  • Anticonvulsants do not seem to relieve neuropathy related to chemotherapy, although they are often effective for other types of neuropathic pain.

If the pain is unresponsive to any of these treatments, many patients will find relief with an opioid.

But should we copy this in Britain?  In my case, my neuro-surgeon kept a very close eye on me;  after prescribing Gabapentin, he called me back into his office a month later, to say he had been reviewing my case, and didn’t think this was right for me – giving me a reasoned explanation which made a lot of sense.  But how many NHS doctors would have the time to do this?

HERE’S WHERE EXERCISE HELPS

Judith Paice, PhD, RN, director of the Cancer Pain Program in the Division of Hematology-Oncology at Northwestern University’s Feinberg School of Medicine in Chicago, Illinois, recommends a multifaceted approach to managing CIPN, including physical activity.

“These patients need to exercise, to keep moving to ensure that they don’t lose muscle strength,” she advises.

However, their symptoms require special safety precautions, because “they can lose proprioception—the spatial orientation of their bodies—so they are at risk for falls and other injuries.

They should make sure their walking surfaces are nonskid, eliminate throw rugs, and use a night light. If their hands are affected, they should turn down the temperature of their hot water so they don’t burn themselves because, paradoxically, their sensation of what is normal is reduced. They need frequent assessments of their feet and good foot care.

A terrible irony is that someone can survive the onslaught of cancer, only to spend the next decade or more coping with neuropathic pain caused by the very treatment that ensures the person’s survival. As more patients with cancer are survivors, more of them suffer with CIPN.

FUTURE

Given the scope of the problem, a search for medications that specifically treat this type of pain makes sense. One drug being considered, KRN5500, is derived from the antibiotic spicamycin.7 It was discovered by researchers looking for new treatments for myeloid leukemia. Although the derivative was not effective for myeloid leukemia, it did prove surprisingly successful at relieving neuropathic pain, and joint trials with the National Cancer Institute (NCI) are underway. This may be the very welcome beginning of a new armamentarium for CIPN. ONA

 

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FDA says NO to Avastin for breast cancer

Fda

Image via Wikipedia

 

America’s Food and Drug Agency

turns down Avastin appeal

 

In Washington, advisers to the Food and Drug Administration voted 6-0 to halt the use of cancer drug Avastin for the treatment of breast cancer.

They say studies have failed to show Avastin is effective for that purpose.

Makers Genetech had mustered a mass of testimonies from doctors and advocacy groups, and patients such as  Crystal Hanna, a mother of two who will celebrate her 36th birthday Friday.

“I’m a testament that the drug does work…I’m not just a statistic,” she said. “Keep breast cancer on the label so that I and others like me can celebrate more birthdays.”

This was a very hard-fought political battle, and Advisers acknowledged the emotional nature of the issue, but said  science should prevail. “I think we all wanted Avastin to succeed,” said Natalie Compagni-Portis, a member of the committee. “And yet what we have to do today is respond to the research that’s been presented to us…these studies didn’t bear out that hope.”

The drug will remain on the market for other cancer treatments, but the FDA’s withdrawal will likely mean insurance companies won’t cover it for breast cancer patients. As a result, many women won’t be able to afford the treatments, which can cost up to $100,000 a year.

Though the FDA will make the final decision, it rarely ignores recommendations of its advisers. One of the rare instances was in 2008, when the agency approved Avastin for breast cancer treatment for the first time. The decision came under the agency’s “accelerated approval” process, which fast-tracks potentially life-saving drugs on a conditional basis.

WASHINGTON…A panel of advisers to the Food and Drug Administration voted 6-0 to halt the use of cancer drug Avastin for the treatment of breast cancer, saying studies have failed to show Avastin is effective for that purpose.

The recommendation Wednesday came after two days of testimony from patients, doctors, and advocacy groups. The panel faced several tearful accounts, like that of Crystal Hanna, a mother of two who will celebrate her 36th birthday Friday. “I’m a testament that the drug does work…I’m not just a statistic,” she said. “Keep breast cancer on the label so that I and others like me can celebrate more birthdays.”

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Advisers acknowledged the emotional nature of the issue, but said the science should prevail. “I think we all wanted Avastin to succeed,” said Natalie Compagni-Portis, a member of the committee. “And yet what we have to do today is respond to the research that’s been presented to us…these studies didn’t bear out that hope.”

The drug will remain on the market for other cancer treatments, but the FDA’s withdrawal will likely mean insurance companies won’t cover it for breast cancer patients. As a result, many women won’t be able to afford the treatments, which can cost up to $100,000 a year.

Though the FDA will make the final decision, it rarely ignores recommendations of its advisers. One of the rare instances was in 2008, when the agency approved Avastin for breast cancer treatment for the first time. The decision came under the agency’s “accelerated approval” process, which fast-tracks potentially life-saving drugs on a conditional basis.

Approval was based on a single study by the manufacturer, which suggested the drug prevented the disease from advancing for an average of 5.5 months. But subsequent studies have failed to replicate the results, and have shown the drug carries serious risks like high blood pressure, heart attacks, and bleeding.

“We are very disappointed by the committee’s recommendation,” said Krysta Pellegrino, a spokesperson for Genentech, which is based in South San Francisco. The company has successfully marketed Avastin as a blockbuster drug for treating colon, lung, and brain cancers.

What next?

According to reports, approval was based on a single study by the manufacturer, which suggested the drug prevented the disease from advancing for an average of 5.5 months. But it was said that subsequent studies failed to replicate the results, and showed the drug can carry serious risks like high blood pressure, heart attacks, and bleeding.

In Britain, this might mean drug companies paying much more attention to keeping patients happy, instead of ignoring side effects that patients present.  With the new broom sweeping through the NHS, patients are going to be demanding value for money, and questioning if the sometimes horrendous side effects actually produce a compensating benefit to them, rather than the drug company’s profits.

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Livestrong charity says just 'learning to live with cancer' not good enough

English: Tenovus Mobile Cancer Support Unit

English: Tenovus Mobile Cancer Support Unit (Photo credit: Wikipedia)

Challenges faced by cancer survivors

 

BETTER CANCER SURVIVAL rates across the world have produced a new problem.

“It’s not the cancer that’s the worry – it’s learning to live with the after-effects of cancer drug side effects”, say survivors.

In Britain, the health service has begun to realise making life easier for survivors is highly important, so has set up the National Cancer Survivorship Initiative.  Sadly, like most initiatives, it is foundering in a morass of paperwork and ‘meetings’.

In Wales, the Tenovus charity is doing fantastic work, but although this is a superb initiative, its services need to be duplicated across the UK.

Lynda, who uses their services,  says
“I was diagnosed with breast cancer in August 2008”.   She had a mastectomy and more treatment, and “my partner has a heart condition, and so whilst I was recovering from my mastectomy, we had no money. We did not know which way to turn. I was then told to contact Tenovus.

Their Specialist Advisers made numerous phone calls and filled out lots forms for me. Within a week the staff at Tenovus had sorted out our money and arranged for a crisis grant which allowed me and my partner to sit back and enjoy our Christmas. If it was not for Tenovus, I don’t know what we would have done; they took all the worry off us.

It has been a long road and a hard road but with the support of family and friends and of course help from Tenovus, they have helped me get through this journey.”

However, there are many, more such units that are needed.

Macmillan provides a huge support system for dealing with money problems – but what of those whose problems are long-term side effects from drugs?

I Learned to Live with It” Is Not Good Enough”

In the States, the huge amount of publicity over Lance Armstrong taking drugs has rather over-shadowed his Livestrong Foundation’s work.  But this charity has published a report on Post-Treatment Cancer Survivors in the LIVESTRONG Surveys: A LIVESTRONG Report, 2010.

Recognizing the growing number of cancer survivors in the United States, LIVESTRONG launched the LIVESTRONG Survey for Post-Treatment Cancer Survivors in 2006. Cancer survivor respondents in that survey experienced significant concerns, which for many were not addressed.

To further understand post-treatment cancer survivorship and examine trends over time, LIVESTRONG launched a similar survey in 2010. This report reviews the results from the post-treatment cancer survivors in the 2010 LIVESTRONG Survey and compares them with the 2006 LIVESTRONG Survey for Post-Treatment Cancer Survivors.

Cancer survivors who responded to these surveys experienced a variety of physical, emotional and practical concerns.

While respondents had varied experiences in terms of type of cancer, type of treatment, time since treatment ended and a number of other characteristics;  for these survivors life after a cancer diagnosis continued to bring changes and challenges.

98% of cancer survivors experienced continued physical, emotional and practical concerns. Yet many did not receive help for their needs.  This is probably due in a large part to the fact that patients’ doctors do not understand that once their patients leave hospital, that is not the end.  However positive a cancer survivor tries to be, they often find they are overwhelmed by lingering side effects from treatment, varying from radiotherapy to drug side effects.  Most doctors are not trained to deal with these, and cannot understand why patients keep coming back with problems.

At a recent Macmillan conference, a doctor seriously asked “once they leave hospital, why can’t cancer patients just get on with life?”

Hopefully, Livestrong and other post-treatment surveys will explain just why cancer patients are too debilitated to ‘get on with it’.

In the LIVESTRONG survey,

  • 58% of respondents who had experienced at least one physical concern did receive care
  • 50%  of those who experienced emotional concerns received help
  • only 20 % of those with practical concerns received help.

After analyzing this information, Livestrong believe more should be done to address the needs of cancer survivors. These results highlight the gap between who reports concerns and who receives care for those concerns as a critical breakdown in post-treatment survivorship. This breakdown needs to be addressed.

We have identified three key steps that we believe can help to address the gaps between what cancer survivors are experiencing and what we are able to provide. We must…

  1. Connect people to the resources they need.
    When care exists for—and helps to ameliorate—post-treatment survivors’ concerns, connecting more survivors to this care is an actionable means to improve post-treatment cancer survivorship.
  2. Identify and disseminate the essential elements of survivorship care delivery that can help to ensure cancer survivors’ needs are met.
    To address the multifaceted experience of surviving cancer, we need systems of care that incorporate a variety of disciplines which are positioned to address the physical, emotional and practical concerns of post-treatment survivors. The cancer community should identify the minimal requirements for survivorship care that address the most common physical, emotional and practical concerns experienced by survivors and leverage resources, such as Health IT platforms, to coordinate good care.
  3. Conduct continued surveillance of the concerns of cancer survivors and disseminate research to better understand the experience of post-treatment survivorship.
    Surveillance at the national and local levels should occur on a regular basis to measure the needs of and receipt of care by cancer survivors, including survivors in the post-treatment period. Continued research and attention to this unique piece of the cancer continuum—life after treatment—is vital as the number of survivors increases steadily.

What happens now?

The more surveys highlight the problem, hopefully the more patients will report problems to their doctors.  The first time a doctor is told that post-cancer, you are suffering from fatigue – you risk being told ‘you’ll get over it’.  By the time the tenth patient has reported the same problem, doctors will hopefully think about referral to a suitable clinic or specialist.  But patients MUST report symptoms, and not be made to feel they are complaining over something trivial.

  • Watch cancer charity forums.
  • Go to online chatrooms and see how many others have same symptoms.
  • Badger you doctor for help.

Ask for referrals to pain clinics, insomnia treatment, dermatology departments to deal with skin problems etc.

“If you wait for doctors to offer help – you will wait forever whilst the NHS system only allocates 6 QOF points for dealing with us”, says cancer patient Adela.  She is right – other conditions from Asthma to Alzheimers have negotiated for higher QOF allocations (up to 93 per patient), and when doctors depend on QOFs to allocate money, cancer isn’t seen as a priority.

 

The results from the Livestrong survey are derived from 3,129 cancer survivors in the 2010 iteration and 2,307 cancer survivors in the 2006 iteration who voluntarily participated, primarily online. The majority of respondents were Caucasian/white, female, under the age of 55, insured and employed. While the results of this survey may not represent the experiences of all post-treatment cancer survivors due to its voluntary nature, the findings make an important contribution to the scientific understanding of the needs of this group.

 

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Are you daft as a brush? Join a charity helping cancer patients

Launched with a memorable name,                                                                this charity provides sensible help

 

Cancer patients often have problems getting to hospital for treatment.

If they qualify for patient transport, the buses can pick up early in the

morning, leaving the patient waiting hours once at the hospital.  Then there is the problem of return transport …..

So most patients struggle in by themselves, or if they can’t drive, manage to persuade neighbours to run them in – but there is a limit to the amount of good-will one can ask of friends.

Now, Daft as a Brush charity has been launched, to take patients in comfort, off to hospital in the vehicles you see here.

 

Does this work?

In the States, there is often a neighbourhood group that will arrange for you to be taken to hospital – and now we have Daft as a Brush for lucky patients in and around Newcaste-upon-Tyne.   Needless to say the vehicles were bought from Nissan, whose factory is just up the road.

Eventually founder Brian Burnie wants to be able to carry 50,000 cancer patients a year – but he is going to need a lot of volunteers, because every vehicle will have a Chauffeur (Brian says they look after people, like the old-fashioned chauffeur, rather than just driving) and a Companion.  This Companion will be able to go with the patient into the hospital, deliver them to right place, and stay with them during treatment if needed.

And no worries about paying daylight-robbery car parking charges!

How it started

Brian used to own Doxford Hall Hotel – and one day he sold it for £9 million, and used the money to found his charity.

Now the charity says, “we are delighted to announce that Daft as a Brush Cancer Patient Care is GO ! Our first two vehicles are on the road…..

As from 4th March 2011 they were in business;  their first 2 vehicles, “Starlight” and “Sparkle” are now on the road.

Their first passenger, Eddie Carson,  wasn’t able to drive due to his treatment, so used the service during his radiotherapy treatment at the Freeman Hospital.

The vehicles will also be available for anyone undergoing Chemotherapy treatment

Now, Daft as a Brush need your help !

Lots of volunteer positions are available, and anyone interested should call 0191 23 28 999 for more details.

The regions to be covered by Daft as a Brush are: Northumberland, North Tyneside and Newcastle upon Tyne.

There would be no charge to the patients for our Service. The service would entail collecting and transporting the patients in a safe and comfortable environment, from where they are living, taking them to where they will be having their treatment. If required staying with the patient whilst they have their treatment and then bringing them back home in readiness for their next course of treatment.

So, if you would like to be involved with Daft as a Brush,

please call into the  office at 3-5 Hood Street, Newcastle upon Tyne

or call 0191 23 28 999.

Email: info@daftasabrush.org.uk

Registered Charity Number: 328 432 Company Number: 233 3474

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Anticipatory nausea – and how it can affect you

Heart Candle

A Patient’s Experience

Normally I steer clear of ‘awful experiences’ – because everyone reacts differently.

And for most people cancer treatment is handled fairly well today – it’s just the side effects that can be BXXXXs!

But an email from a friend, who is a patient and a professional worker, made me think.  I asked if she would mind if I posted this, as it seemed to encapsulate the problems that a small percentage of patients suffer – and no-one does much about this

This is not to frighten you, but to show that IF you have heavy nausea symptoms don’t let staff bully you.  You are NOT the only who has these, however much they try and tell you “No-one has had this before”.

Mary’s story  (not her real name)

“I really want to help anyone else in a similar situation.

What you said about drugs to treat side effects of drugs, which are treating side effects of drugs….and so on.. is so true with so many different illnesses .

I am trying to get through some sort of chronic fatigue at present – but am trying to do it with the help of a nutritionist – not NHS – and it’s slow but I think I’m getting stronger – but if I’d been taking a lot of drugs (I take 10mg of a betablocker each day), they would have depleted my immune system; and I need a strong immune system to get over the fatigue! Catch 22!

I have been looking through some literature on anticipatory nausea and vomiting, and just researching ANV again is making me feel nauseous.  Fortunately I didn’t get the vomiting.

I think I got ANV because of the chronological treatment path – I did not have ANV during the first course of chemo, which was 5 weeks 24/7 via a piccline + radiotherapy – felt nauseous but not in an anticipatory way. But then I had surgery to remove the tumour in my colon, plus lymph nodes – the whole thing in hospital was a total nightmare, with all the procedures due to MRSA etc etc – and prolonged! So was in quite an anxious slightly traumatised state when I started the 7 months chemo, and seeing as so far the worst things always seemed to happen to me – I was anticipating the worst with the chemo! So a prime candidate.

It happened pretty much as they state in the articles – about 4 treatments in – and I think I had a total of 30 to go through – weekly.
My hospice nurse who used to visit me suggested I take half a tablet of some kind of sedative before each treatment, but tried it and it just made me feel doped AND nauseous!! Didn’t work!

The nurses in the chemo unit were  very aware of and sympathetic to the condition. They tried different visualisation techniques with me, treating me sometimes outside the chemo unit – in particular there was one nurse who I couldn’t bear around me – so they stopped her giving me the injections – unfortunately she was the senior nurse – I couldn’t even bear to see her which was virtually impossible!

I used to wait outside the chemo unit – take homeopathic travel sickness pills, wear seabands – acupressure wristbands – also had acupuncture and aromatherapy massage at the hospice, used to suck on opal fruits, drink pineapple juice and listen to my MP3. It all helped slightly but as the treatment went on – well – had to ask for reduced dose as couldn’t tolerate the nausea as the drug accumulated – but was this psychological?!

And I couldn’t speak to anyone during the latter part – each time I felt violated and I know my brain and body were doing their damndest to kee the poison out – while I was trying to turn it around in my head that this would rid me of the cancer and was therefore good!

Think maybe the ANV may not have happened if my treatment hadn’t followed such a traumatic 2 months in hospital – I don’t know. Do know it’s a very real thing – knew of someone who had ANV while having chemo for testicular cancer – v. toxic – 2 years later he was working in a shop – his consultant walked in, went over to say hello, the chap turned round…..and promptly threw up!!

So I do think that people who’ve had ANV – as they say in some of the articles, the symptoms last well after treatments finished, and treatment with drugs isn’t successful – it needs to be psychological – I know if I was told I had to have another course of chemo, the ONE thing that’d stop me is ANV, even if they said I’d be fine after – and this is the type of reaction which the medical profession realise is very real to quite a high proportion of patients and needs to be addressed before, during and after treatment.

I fulfil alot of the criteria which make me receptive to ANV! Female, under 50 – just – when I had treatment, suffer from travel sickness ( v. extreme and have had labyrinthitis a couple of times), I react psychosomatically, so again a prime candidate!

Helpful ideas

I read in one article that video games really help – didn’t realise this, although I do use alot of Facebook applications which are basically videogames – Farmville, Pathwords – and they really have helped because I lose myself in them – so that bit works!

And the Candle above?  Another friend used to take candles with her, saying that their calming effect worked wonders.  But again, candles can make others nauseous, so ask first.

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Is this why our cancer statistics are so bad?

...of course, this was prior to the actual zap...
Image via Wikipedia

Thousands of cancer patients are not being given most successful treatments


BBC reports radiotherapists claim too few people are getting radiotherapy because GPs and the public see drugs and surgery as better options.

They warn this could explain why the UK has lower cancer survival rates

Estimates say 52% of all cancer patients in the UK should receive radiotherapy, but actual figures are:

  • England and Wales 38% of patients get radiotherapy
  • Northern Ireland  35%
  • Scotland 43%

Experts say that suggests approximately 30,000 cancer patients are not getting what they would consider the best treatment.

What is radiotherapy?

It is a treatment for cancer using radiation, usually X-rays, to damage the DNA in cells. Healthy cells can repair the damage. Rapidly dividing cancerous cells cannot, so they die.

Dr Jane Barnett, president of the Royal College of Radiologists, says “radiotherapy is still a magic bullet.”  Especially now with the use of computer imagery.

Why is it under-used?

Money.  Professionals admit anti-cancer drugs, backed by the pharmaceutical industry, were better promoted than radiotherapy.

Dr Barnett said GPs were also poorly informed about the subject: “Radiotherapy plays a very small part in a doctor’s training, unless you’re going to be a clinical oncologist, compared with drugs and surgery which play a part in many fields.”

The National Radiotherapy Awareness Initiative is trying to improve radiotherapy’s reputation, saying radiotherapy cures more people than chemotherapy, is 13 times more cost effective and is targeted to within millimetres.

Professor Tim Maughan, oncologist at the Velindre Hospital in Cardiff, criticised the government’s decision to set up a cancer drugs fund worth £200m a year.

He said: “It’s the wrong decision. I don’t understand how we can chose to spend money on drugs which have not been deemed cost effect by NICE (the National Institute of Health and Clinical Excellence).

Professor Mike Richards, national clinical director for cancer, says “The recently published national cancer strategy clearly recognises the role of radiotherapy and commits additional funding.”  So why so coy?

What’s to come?

New technologies, such as Intensity Modulated Radiotherapy (IMRT), are more effective at targeting the radiation at the tumour, minimising damage to nearby tissues and reducing side effects.

But UK lags behind Europe:

approx. 20% of European patients have access to IMRT

approx 7% have access in UK

One reason could be NHS’s lack of proper administration.

A radiotherapy unit uses very expensive – but cost-effective – machinery.

  • In private sector these units run for a minimum 12 hours per day.
  • Most NHS units are still governed by old-fashioned administration, and run 8 hours a day.

One of the newest forms of treatment, proton beam therapy, fires particles at a tumour rather than using radiation waves.

If you think this might benefit you, DEMAND to be sent to Europe for treatment;  patients are being funded by NHS to go abroad – but NHS is keeping quiet.  Natch.

Make sure if radiotherapy could help, that you demand to be given a course.

And call La La Lansley’s bluff – he keeps on spouting mantra that we lag behind Europe, so use his words to get best treatment for yourself – abroad if need be.

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Sometimes, we DO know best when it comes to our health

Capsules
Image by Auntie P via Flickr

Side effects of cancer drugs

often surface years after

drug approval

.

Have you had a medical problem, which you think might have been caused by one of the drugs you are prescribed – but doctors pooh – poohed any suggestion these might be the cause?

Recently Reuters Health reported  on a story released by Canadian researchers, saying that  “serious and sometimes life-threatening side effects often go unreported until years after cancer drugs have been approved”.  Reuters Health compiles serious analysises of medical research and treatment emanating from major studies.

For many patients, drugs are life-extending.  We wouldn’t have improved survival statistics if it wasn’t for these products.  However, a growing minority are experiencing side effects caused by these drugs – some of which are very nasty.

Sounds familiar?

When asked if they have experienced problems, for many cancer patients the answer will be a resounding yes.  Often   they have tried to get their medical team to listen if  they report  problems, but find it impossible to get them to even check if symptoms might – just might – be caused by a drug they were or are on.

If you have experienced problems, researchers from the University of Toronto have discovered, “within four years of approval, five of the 12 drugs they looked at had earned a “black box warning” from the U.S. Food and Drug Administration, which approves new medications”.

The research was led by Prof. Ian F. Tannock, who says  “it’s a warning to be very careful.,”  Tannock is an oncologist at the University of Toronto, and said “patients need to be informed that with a new agent there may be added risks.”

Tannock’s team examined so-called targeted therapies, a budding class of cancer drugs that work by interfering with specific molecules involved in tumor growth. Therefore it was expected that the medicines would be safer than traditional chemotherapy.

However, results questioned this assumption.  When questioned by Reuters Health, Dr. Thomas J. George commented, “it’s concerning to say the least. When we as oncologists prescribe new therapies we have to be on the constant lookout for side effects and outcomes that aren’t necessarily what the trials would have predicted,” added George, of the University of Florida.   (George was not involved in the study).

The new findings come in the wake of research showing that most trials of experimental cancer drugs report increases in at least one severe or life-threatening side effect.

So what about your experiences?

You might have had nasty problems, and wondered if these were caused by the drugs you were put on.  But when you ask your oncologist, they tell you, “I have never seen/heard of this before”.

But they need to be more vigilant, and keep up with what the researchers come up with.

After all, who would have connected carpal tunnel syndrome with a commonly-prescribed aromatase inhibitor?  Or heart problems, skin lesions, blindness, etc?  All symptoms that have recently been acknowledged as possibly been caused by drugs patients were taking.

Some of these horrid conditions may have had nothing to do with the drugs they were taking, but the medical profession needs to undertake more research and LISTEN to patients, before they dismiss their fears.  Most patients won’t challenge a doctor, but sadly they often need to do so.

Why does this happen?

According to the Reuters report, one reason why this can happen is that trials, which form the basis for FDA drug approval, might be too small for rare side effects to surface, or they include only highly select patients.

To help yourself, you can now point to this research, and other studies, and demand more investigation.

What happens in UK

In Britain, cancer survivors have long suspected that drugs they are on might cause problems, but with the limited average of ten minutes allocated for an NHS visit to an oncologist in Clinic, many don’t have time to discuss what might be causing these.  The solution is often the easy option of  “come off the drugs”.

This is not fair on the patient, who wants the reassurance that the drugs might help them to live longer.  But may well be a contributory factor to why, in Britain, our survival rates lag behind those of most European countries.  From personal experience, when I had nasty side effects, and had been told to “come off the drugs”, I didn’t.  Instead I went off to hospitals in France and Germany, where the side effects I experienced were well documented, and immediately the doctors to whom I spoke suggested clinically trialled solutions – which worked.

But this took time :  the doctors had to listen to me, examine me, take samples, swabs,  go through my medical notes, ask questions, etc.  in order to come up with a solution which worked.  This type of treatment is something that the NHS has less and less time to offer to patients.

Or the drug companies tell the patient to “fill in the Yellow Card”.  These are a fairly long form that the patient fills in, listing symptoms.  Patients will often have to phone round to get facts confirmed.  Once filled in, they are sent off – and that’s the last the patient hears.  When I phoned to ask what had happened to ‘my Yellow Card, I was told “because of Data Protection Act   we can’t tell you – even though you filled in the card.  So I gave up.

Solution would be to be more helpful to patients, and take a pro-active stance in investigating – but drug companies hide behind convenient rules and regulations, which mean that patients have the frustration of trying to find information, but coming up against brick walls. Then they are told to go back to their doctor – the very person who has originally dismissed their concerns and told them “I have never seen this before”, or similar statements.

Or else the solution means going to a major cancer centre in Europe get solutions.  But who can afford this every time?

Why does this happen?

Tannock says the problem is that very few doctors actually look at the labels. Instead, they stick with the published studies that led to the drug’s approval and first label.

Focusing only on drugs with updated labels, Tannock’s team found that half of the 76 serious side effects described in them hadn’t been on the initial label. Of potentially fatal side effects — such as blood clots, strokes and lung problems — that number was 58 percent.

“Many of the reports that led to the warnings did not come from published studies,” added Tannock, whose findings appear in the Journal of Clinical Oncology.

So if you have unexplained side effect:

Print out report link.reuters.com/byd27m

1.  Take this to your Oncologist and/or CNS

2.  And don’t take no for an answer.

Background on Prof. Ian F. Tannock

Currently working for Ontario Cancer Institure, gained his PhD at Inst. Cancer Research UK in London etc.

If you Google him you come up with a lot of very interesting info, particularly his statement, “I have a long-standing interest in improving methods for undertaking clinical trials, and especially in use of endpoints such as quality-of-life that reflect patient benefit directly. We have applied these endpoints in clinical trials for patients with prostate and breast cancer, and are interested in the mechanisms by which chemotherapy may cause fatigue and cognitive dysfunction.

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Easy-to-read, compassionate guide to Inflammatory Breast Cancer

INFLAMMATORY BREAST CANCER.

VERITE REILY COLLINS

KEY SELLING POINTS
  • Compassionate guide for suffers of rare cancer.
  • First book on the subject.
  • Easy to read, serious issues treated with humour.
BOOK INFORMATION
ISBN: 9781848290396
Pub Date: August 2010
Format: paperback
Extent: 144 pages
Inflammatory Breast Cancer (IBC) is a highly aggressive and thankfully rare type of breast cancer, which is not yet widely recognised both by the public and the medical profession.

When a patient presents to her GP, there is often a misdiagnosis in the first instance. This is because the symptoms include swelling, redness and heat in the breast, but often no discernible lump. Consequently the condition may be only diagnosed as a less serious dermatological problem.

The author is herself a survivor of breast cancer and can therefore write with expert knowledge and experience. She discusses with compassion, insight and humour everything a person ought to know about IBC –

initial fearsdiagnosis – treatmentoperation – post-op care. She discusses the different forms of treatment, and also the side issues – where to find support from carers and friends, what to eat, how/where to go on holiday, etc.

A valuable resource of information both for the patient and the professionals involved.

Of course the book also tackles the scientific and medical issues and the various drugs used in the treatment, but Verite writes throughout in a clear, simple style that enables easy understanding of the more complex details.

There are many books on breast cancer, but this is the first to specifically discuss inflammatory breast cancer. It is a guide book that will be immensely valuable to IBC sufferers, their carers, family and friends, and to GPs and oncologists around the world.

CONTENTS; 1. Introduction 2. What is Inflammatory Breast Cancer? 3. Diagnosis 4. Help – what should I ask doctors and nurses? 5. Where do I find sensible website info? 6. Operation 7. After your op – returning home 8. Treatment after the operation 9. How will I feel? 10. Chemotherapy 11. Radiotherapy 12. Hormonal drugs 13. Handling side effects from chemo and hormonal drugs 14. Complimentary and alternative therapies 15. Why have massage? 16. Now I want to know – where to find help 18. Carers and friends – how they can help 19. Food, weight gain/loss, what can I eat 20. Take a holiday – but where/how? 21. Doctors are humans – how to deal with them 22. Having fun – where to go for information on what’s good 23. The help minefield 24. Regaining my life – and handling change 25. Contacts, organisation, charities, international agencies and other helpful people 26. Index
This is what the publishers say – I say that this book should be issued with a health warning, as I AM NOT MEDICALLY QUALIFIED.

But I wrote the book from the heart, trying to tell readers what they MIGHT expect, so that treatment didn’t come as a shock.  But also, where I could, suggesting ideas and products that myself and others had employed, to try and make the treatment experience easier.

When I was treated, I found that the Internet was incredibly helpful – so I have tried to include as many approved web addresses as possible, to make it easier to find things out.  Readers can use the book as a ‘shopping list’ of contact information.

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Blame chemo-brain

American Cancer Society Logo
Image via Wikipedia

American Cancer Society says Chemo-brain does exist

Good news is it really happens.

Bad news is we can’t go on blaming forgetfullness on this condition;  American Cancer Society says we recover within one to two years.

For years, many cancer survivors have worried, joked about, and been frustrated by the mental cloudiness they experience during and after chemotherapy. This side effect has come to be called “chemo brain.”

According to the American Cancer Society, until recently evidence of this condition was largely anecdotal, and many patients felt like they were “going crazy” or that “it was all in their heads.” On the contrary, chemo brain is very real. It can now even be seen in imaging studies.

One of the biggest hurdles in solving the chemo brain puzzle has been overcome: The scientific and medical communities now recognize chemo brain as a side effect of cancer treatment. This recognition came in large part from imaging studies of the brains of people who had complained of chemo brain. These studies showed smaller brain size in the areas of the brain that are part of memory, planning, putting thoughts into action, monitoring thought processes and behavior, and inhibition.

The picture is clear: Although the brain usually recovers over time, it can be impacted by chemotherapy, proving that the condition known as chemo brain is very real.

What is chemo brain?

As many as 25% to 30% of patients have chemo brain that is not a byproduct of other chemotherapy side effects such as anaemia and fatigue.

According to scientists who research it, chemo brain is a cognitive dysfunction or impairment. Patients cite the following as examples of chemo brain:

* Memory lapses: forgetting things they usually have no trouble recalling
* Trouble concentrating: finding they can’t focus on the task at hand and their minds wander
* Trouble remembering: difficulties remembering small details like names and dates
* Inability to multi-task: difficulty doing more than one thing at a time, like answering the phone while cooking, without losing track of what they were doing
* Taking longer to finish tasks because of slower thinking and processing
* Trouble remembering common words: difficulty finishing sentences because they can’t find the right words
* Inability to learn new skills

So tell you doctor if you have any of the above symptoms.  And if they don’t believe you, print out this information which has been sent direct from the American Cancer Society.

What causes chemo brain?

Unfortunately, the American Cancer Society says  what causes chemo brain is not known – at least not entirely. What is known is that most people with chemo brain have it as a byproduct of other chemotherapy side effects such as anaemia, fatigue, and depression. In other words, all of these side effects have the potential for causing the side effect of chemo brain. The good news about this is that side effects like anaemia, fatigue, amd depression are treatable.

What is not yet known is how to treat those patients whose chemo brain isn’t caused by one of the above factors. It’s believed that as many as 25% to 30% of patients, both men and women, fall into this category.

To make things even more confusing, some people with cancer are found to have these kinds of cognitive problems before their cancer is treated. Even in these people, the problems tend to improve over time after cancer treatment.

A word of caution

The American Cancer Society says it’s important to remember that most people do eventually recover fully from the effects of chemotherapy, usually a year or two after the end of therapy. Because of this and because chemo brain is usually mild, you should not change your treatment plan just to try to prevent chemo brain.

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